Thursday, December 13, 2007

Every little bit counts

Each day B gets a bit better and better. Today we went for a short walk, and she spent some time playing her recorder beautifully, just like before. She also has been working on a gorgeous crocheted shawl that is so very soft. We found this light blue yarn...several skeins of it...at the thrift store one time. She let me work on the shawl while I was in the hospital and she was too sick, but most of the work on it is hers, and the project is hers, so I need to find something of my own to do.

She also took several long naps, and got carsick. If you are praying for us, please pray that: her meds will no longer make her nauseous and headachy and dizzy, that her energy can improve, and that she will continue to improve to the point of starting school work up again in January.

The doctor we went to see today reminded us of this fact: This is physical. Just because we don't yet have the right test to pinpoint exactly what is going wrong in her brain, it is still physical. Psychiatric problems are physical problems. This cannot be stated enough. It needs to be demystified, and it needs to be treated like any other medical condition that must be managed long term, such as diabetes or high cholesterol.

I think the reason psych issues make people uncomfortable is that they affect behavior and that affects the community. It affects social interaction, how a person is, behaves, responds. These things can really interfere with the quality of a person's life for themselves, and also for the persons in their community. And because it affect the community, it is somehow larger than an individuals bodily limits. But the good news is, it's not catching. So it doesn't affect the larger community the way something like HIV would.

Get a movie like K-Pax, or Beautiful Mind, or Rainman, or what's that one with Richard Gere where he plays a bi-polar guy? Good examples of how it must be so much worse for the person suffering than it is for the person's surrounding the suffering person. I'm thinking especially of K-Pax, and the people in the background at the mental hospital. Look at them, and know that underneath all the drooling catatonic weirdness, persons are aware and thinking and knowing. This is humbling and frightening to consider, when I know that I (and I suspect most persons) have that natural sense of revulsion that wants to keep this sort of thing at arm's length.

But this was my own daughter. Arm's length was never a consideration.

You see, last night, when I was tucking her in, she told me that she remembers everything from when she was catatonic. It was so scary. As an outsider, (and this is true with observing Autism as well) we see unresponsiveness and an inability to communicate, and we think: "No one is home." But this is not so. The reality is, someone is very much at home, but they are locked in, and can't get out. Ears can hear, and eyes can see, but tongues cannot speak and bodies cannot move.

9 comments:

Thank you for writing this...I have been wondering how you all are! I have never stopped thinking of you, just stopped leaving messages on your cellphone. Don't know what else to say, so I'll just say the truth: I love you and I miss you, and I hope B finds her way and if there's anything I can do from here, let me know.

This is physical. Just because we don't yet have the right test to pinpoint exactly what is going wrong in her brain, it is still physical I am *so* happy you have this doctor, because this is so true.

Continued prayers. I recall that her Baptismal name begins with an A, am I remembering that correctly?

That doctor is a keeper! And med balance can take a while (been there, doing that), so hang in there.

FWIW, not all priests have experience with the mental stuff (especially the part about the physical causes), so if necessary you might want the doc to give your priest a call.

Nine years into Orthodoxy, and sixteen years into a psych diagnosis, I'm finally realizing that physical is physical...the enemy will use that particular weakness to get at me. The root physical cause isn't my fault; it's my responsibility to respond to the situation to the glory of God (I'll let you know when I get that far!). This includes confession when I succumb to the temptations brought about by the physical issues. I'm sure you're familiar with all this, Alana!

It's a fine line to walk. But a priest who knows you, loves you, and understands your situation, is a really big blessing :-)

We continue to pray for you all, especially Bethany. It must be wonderful for you to hear her play her recorder again. I pray that she will continue to improve and that the doctors will figure out how best to help her heal. You are all in our prayers. And we hope to see you soon-- we miss you!

I've been following your story. Thank the Lord for wonderful doctors and wonderful medications. I think our society still doesn't fully understand that people have organic problems that affect their minds. You are right --this is no different than any other kinds of disease. My prayers are with your family